The initial diagnosis created the predictable sense of shock and fear, however the wait for scan results was the most emotionally agonising 5 days of the whole journey. Fortunately the results provided relief rather than greater trauma.
Exploring the options in regard to treatment was an incredibly challenging experience. My urologist, whilst promoting the positives of surgery, encouraged me to investigate the other available treatments, which I did in a variety of ways. One of the most valuable and draining stages was a weekend away with three close 'mates'. One a mathematician, another a research scientist and the third a secondary school teacher. They in fact had done some 'homework' before our workshop weekend - including a risk analysis chart, networking with colleagues etc. No decision was made at this time, however a week later I made MY decision with a sense of confidence and clarity.
Some minor procedural difficulties during surgery saw me in Critical Care but my recovery in terms of healing and incontinence went as well as I'd hoped. However my resolve was really tested during my stay in hospital when on Day 4 a 37 y.o. Colleague from school finally lost his battle with cancer (in the same hospital and after having been my first post-operative visitor). On Day 6 close friends arrived to break the news that my father has passed away earlier that day. Phew! My philosophy that ' It doesn't matter so much what happens to you in life but rather how you deal with it that's important'. Not original I know but I value the sentiment.
Since surgery in Feb 2001 my PSA has hovered around the 0.1 mark, and I'm very keen to return a magical 0.0 reading.
Over the past 24 months my life has returned to a similar pattern to my previous existence - with a small number of significant differences. These changes I will share with you when next I write.
John is now 55 with a PSA of 0.1. He is receiving no current treatment.
John's story update: Approaching the 2nd anniversary of my 'radical' I am feeling somewhat anxious about my next 'blood test' as is my regular response to such an event. Particularly as about 10 weeks ago I was experiencing the same symptoms as prior to my diagnosis. My urologist, Dr S Lindsay, has been fantastic throughout the entire journey, as has my GP Greg Mewett. A battery of tests resulted in the 'all clear', with the most likely explanation being that my body remembered the symptoms and replicated them in response to a stressful period in my life. I felt quite comfortable with that 'theory'.
The two years have provided much learning and a few moments of darkness, but generally I have put the prostate experience to one side and endeavored to approach everyday life with an optimistic attitude.
Lots of thoughts, experiences and theories I would willingly share/swap with others.
The world is full of statistics and more statistics. In so many ways I am now more statistically involved in life than ever before. Prostate cancer, PSA readings etc and now a member of the 'marriage over' sub-group.
With just days to go before my next 6 monthly check-up my focus on my health and happiness becomes even more finely tuned. Separated for over 12 months and into a new relationship I am again compelled to reflect on where I've come from, where I am and where I'm going.
My PSA has stayed steady at 0.1, incontinence is not an issue and impotence has indeed proven to be an asset as much as a liability.
At my last check-up my urologist decided to extend my follow-up time from 5 years to 10. After discussion and explanation I am no longer anxious about his decision.
In regard to relationship changes - it has been an amazing part of the 'journey'. Grief, emotional pain and anguish are unavoidable during such times. Then to establish a new relationship and disclose the 'facts' in relation to my health issues has been challenging but also incredibly empowering. A compassionate, sensitive, patient and inspiring partner can turn near tragedy into almost total triumph. Impotence IS a real issue but love can work miracles. Enough said.
The journey continues and I look forward to sharing my experiences along the way.
My most recent visit to 'my specialist' resulted in a reading of 0.03 ng/ml and a 'I don't need to see you again' statement. A reason to celebrate - cautiously due to my superstitious nature. My six monthly visits provided an opportunity to seek positive news and observe first hand the high pressure life of a medical specialist.
One of the most positive outcomes of my experience has been the sharing of my story with young people. Working in a Year 7-10 secondary college has allowed me to increase the awareness of mens health issues - particularly in open question and answer sessions with Health classes. I have continued to participate in Relay for Life events and found the opening lap involving 'survivors and carers' an incredibly emotional experience each year.
I continue to play competition volleyball and jog regularly - with a pitstop essential after about 15-20 minutes of activity.
I wish my fellow travellers all the best!
It is now six and a half years since my procedure and life continues along at a hectic pace - a grandfather for the first time, an AFL premiership (Go Cats!) and still teaching full-time.
2007 has reinforced the fact that you are never alone - I've been joined by three friends. All within five months of each other and all opting for surgery. Is there actually a 'virus'?
The four of us recently met for a meal and a few drinks and formed the first chapter of the Bendigo SAS - the Soft and Soggy 'support group'. Enjoyed an absolutely hilarious night swapping stories and sharing the highs and lows of our individual journeys. Hope to catch up each month for on-going bonding sessions.
It certainly helps in 'normalising' our respective experiences and puts a positive comedic spin on many of our setbacks and challenges.
Life continues on at a hectic pace - still working full-time, a doting grandfather and continue to play competition volleyball. Our SAS (Soft and Soggy) group has increased by one - a close friend of all four foundation members opted for surgery after his diagnosis and has been warmly welcomed into our 'support/social group'. We continue to meet on a monthly basis with our partners attending on a six-monthly basis. This continues to be a source of great enjoyment and support and tends to keep out 'prostate experience' in some sort of perspective. This particularly applies to the sharing of stories related to incontinence and impotence. I am also keen to encourage my wider circle of peers to arrange regular monitoring check-ups.
The past 18 months have provided lots of highlights personally and professionally. Our SAS group has now reached six with our sixth member being an 'associate member' as his treatment was in response to an enlarged prostate. Grandkids are thriving, another flag for the Cats, 40 year teaching service award and played my 1000th game of volleyball.
Currently going through a series of tests related to other health issues - and hoping that no more dramas or emergencies are hiding around the next corner. At work I'm still providing information amd insights re men's health for the young men I teach. They are very respectful and appear interested. Planting the seeds I hope!
Best wishes to my fellow travellers and please continue to share your stories and wisdom.
Since last writing I have continued to experience the roller-coaster ride that life so often provides for each of us. The end of a 10 year relationship, the death of my 26 year old son Jordan 15 months ago, my mother passing away 6 weeks ago and the removal of my gall-bladder three weeks ago have all been challenges and stark reminders of what is truly important in life.
Our SAS (Soft and Soggies) group continues to meet for a meal and heaps of laughs - and predictably has grown in number. Within our group there are common themes (the eternal search for the ideal strategy for dealing with impotence) but also reminders that each person is on a very individual journey and also that treatments continue to evolve and change. The media continues to grow in terms of the knowledge and understanding associated around the issue of prostate cancer.
Having now passed the 11th anniversary of my diagnosis and treatment I am constantly aware of the importance of regular medical check-ups and continue to push that message. 'Feeling ok' is no guarantee of good health.
Twelve years on and life continues to throw up a range of challenges and provide a plethora of 'magic moments'. The second anniversary of the passing of our much loved son Jordan has been a difficult time for all and reinforced my belief in the goodness of people and the importance of loving.
Healthwise I have farewelled my gall-bladder and had a number of minor setbacks. Nevertheless my world has provided a number of changes and I feel lucky to have enjoyed the journey despite some upsets. Prostate wise my reading remains undetectable and my potency improved. The incontinence issue remains under control and I am fortunate to have a very understanding and perceptive GP (Doug Barret).
My partner, Nicole, provides amazing support and empathy and continues to provide the physical and spiritual inter-action that enables me to tackle life with a positive outlook. I am truly grateful for her love and wisdom.
Thirteen years on and life continues at a hectic pace and although I no longer work fulltime (teach .45 time fraction) there is so much to do in relation to grandkids, new home and lots of hobby-driven activities. Over the last couple of years I have noticed an on-going improvement in potency (which I find somewhat puzzling) and a slight increase in incontinence (particularly during and after exercise and the lifting of heavy objects). Now without my tonsils, prostate and gall bladder I wonder what's next! I continue to be genuinely thankful for the medical intervention I received in relation to my prostate and for the initial investigation by my vigilant GP Greg Mewett!
In general terms life continues to be full of fun, challenges and adventures. Health-wise I continue to conscientiously monitor any niggles or worries. On a recent visit to my GP I asked for my PSA to be included in a general blood test - with a '0' reading the result. Generally no issues around continence - just the usual small leakage when heavy lifting or exercising. Erectile function has improved over time - even when not using my 'little blue friends'. Our informal support group continues to meet regularly with two of our members now actively engaged in some low-level medical intervention/support. All members of our group opted for surgery, with 2 undergoing the more traditional pre-robotic surgery. One of our greatest weapons in terms of quality of life is most certainly 'humour'. To go from our younger days when we would walk out of the supermarket carrying a slab of beer on ones' shoulder to now walking out with a box of incontinence pads certainly sums up our capacity to laugh at ourselves.
The gatherings are also quite interesting from the point of view of brief but meaningful updates in relation to any issues, news in relation to improved treatment and evolving technology. Trust, humour and compassion underpin our groups aim of sharing and supporting.
With almost 16 years since my diagnosis and subsequent procedure, I am pleased to report that life continues to provide a 'glass half-full' experience. Whilst the prostate issues appear under control (improving potency and no major issues around incontinence), I gratefully continue to pursue the incredible range of challenges that life offers. Admittedly I tend to be over-sensitive to any slight niggle or change in bodily function. Consequently in the past 12 months I have undergone a video 'tour' of my bladder, a colonoscopy and a couple of blood tests. All clear on each occasion and a sense of relief. A venture into community radio with one of my 'Soft and Soggy' friends has provided a new focus and a sense of excitement. Whilst still working three mornings a week in my role as Transition Support worker for students transitioning from Yr 6 at primary school into Yr 7 at secondary school accounts for most of my week, I am genuinely enjoying the radio adventure. Our show is called 'A New Pair of Old Jocks' and goes to air each Friday from 12:00 to 2:00pm on Phoenix FM 106.7 We are still quite tentative in terms of the technology and will no doubt learn by our mistakes. But hey, isn't that what life is all about! I wish all YANA friends all the best in their individual journeys!
Almost 17 years on from surgery and life continues to provide more highs than lows. Having ticked off the 'three score and ten', I find myself working four days a week and thriving on the challenge. A new hobby has certainly lifted the excitement factor - a two hour show each Friday between 12:00 and 2:00pm on Phoenix FM 106.7 a community radio station in Bendigo. Still participating in a monthly dinner meeting with a group of prostate peers (Bendigo SAS - Bendigo Soft and Soggies) we rarely discuss our medical status unless some significant change has impacted on one of our members. For my part, incontinence is not an issue and and impotence is far less of an issue than 5 or 10 years ago - not quite sure what's going on there. Whenever I have a blood test for an unrelated ailment I always request a PSA reading be included....for my peace of mind. Given the continuing improvements in potential treatments for prostate cancer I am incredibly grateful for the choice I made and for the skill of my surgeon back in 2001.
John's e-mail address is: pearce.john.c AT edumail.vic.gov.au (replace "AT" with "@")